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End-of-Life Care Decision Making

January 23rd, 2013

Just as we create estate plans for our eventual demise, we also need to plan ahead for the possibility that we will become sick and unable to make our own medical decisions. Medical science has created many miracles, among them the technology to keep patients alive longer, sometimes indefinitely. As a result of many well-publicized "right to die" cases, states have made it possible for individuals to give detailed instructions regarding the kind of care they would like to receive should they become terminally ill or are in a permanently unconscious state. These instructions fall under the general category of "end-of-life care decision making." Depending on the state in which you live, this may take the form of a health care proxy, a medical directive, a living will, or a combination of these.

If an individual becomes incapacitated, it is important that someone have the legal authority to communicate that person's wishes concerning medical treatment. Similar to a power of attorney, a health care proxy allows an individual to appoint someone else to act as their agent, but for medical, as opposed to financial, decisions. The health care proxy is a document executed by a competent person (the principal) giving another person (the agent) the authority to make health care decisions for the principal if he or she is unable to communicate such decisions. By executing a health care proxy, principals ensure that the instructions that they have given their agent will be carried out. A health care proxy is especially important to have if an individual and family members may disagree about treatment.

In general, a health care proxy takes effect only when the principal requires medical treatment and a physician determines that the principal is unable to communicate his or her wishes concerning treatment. How this works exactly can depend on the laws of the particular state and the terms of the health care proxy itself. If the principal later becomes able to express his or her own wishes, he or she will be listened to and the health care proxy will have no effect.

Appointing an Agent

Since the agent will have the authority to make medical decisions in the event the principal is unable to make such decisions for him- or herself, the agent should be a family member or friend that the principal trusts to follow his or her instructions. Before executing a health care proxy, the principal should talk to the person whom he or she wants to name as the agent about the principal's wishes concerning medical decisions, especially life-sustaining treatment.

Once the health care proxy is drawn up, the agent should keep the original document. The principal should have a copy and the principal's physician should keep a copy with that individual's medical records.

Those interested in drawing up a health care proxy document should contact an attorney who is skilled and experienced in elder law matters. Many hospitals and nursing homes also provide forms, as do some public agencies.

Medical Directives (Advance Directives)

Accompanying a health care proxy should be a medical directive, also called an advance directive. Such directives provide the agent with instructions on what type of care the principal would like. A medical directive can be included in the health care proxy or it can be a separate document. It may contain directions to refuse or remove life support in the event the principal is in a coma or a vegetative state, or it may provide instructions to use all efforts to keep the principal alive, no matter what the circumstances. Medical directives can also be broader statements granting general authority for all medical decisions that are important to the principal. These broader medical directives give the agent guidance in less serious situations.

With the strict new health care privacy rules now in force, it’s more crucial than ever that everyone consider creating an advance medical directive that specifically names those persons who are entitled to access to health care information about them. Under the privacy rules of the Health Insurance Portability and Accountability Act (HIPAA), which became effective in April 2003, doctors, hospitals and other health care providers may no longer freely discuss a patient’s status or health with spouses or other family members — unless the providers have in hand signed consent forms from the patient. Remember: a general power of attorney for financial matters will not suffice. The instrument must refer specifically to HIPAA.

For an article on state roadblocks that prevent the wider use of advance directives, click here.

Living Wills

Living wills are documents that give instructions regarding treatment if the individual becomes terminally ill or is in a persistent vegetative state and is unable to communicate his or her own instructions. The living will states under what conditions life-sustaining treatment should be terminated. If an individual would like to avoid life-sustaining treatment when it would be hopeless, he or she needs to draw up a living will. Like a health care proxy, a living will takes effect only upon a person's incapacity. Also, a living will is not set in stone; an individual can always revoke it at a later date if he or she wishes to do so.

A living will, however, is not necessarily a substitute for a health care proxy or broader medical directive. It simply dictates the withdrawal of life support in instances of terminal illness, coma or a vegetative state.

Also, do not confuse a living will with a "do not resuscitate" order (DNR). A DNR says that if you are having a medical emergency such as a heart attack or stroke, medical professionals may not try to revive you. This is very different from a living will, which only goes into effect if you are in a vegetative state. Everyone can benefit from a living will, while DNRs are only for very elderly and/or frail patients for whom it wouldn't make sense to administer CPR.

For more information on end-of-life decision-making from the Mayo Clinic, click here.

POLST: A New Approach

Although advance directives or "living wills" provide general guidance on what type of care a patient would like, they are not consistently followed, in part because they don't give health care professionals explicit instructions for making critical decisions about a patient's care.

An alternative has emerged in recent years and has been implemented or is being developed in 38 states: the Physician Orders for Life-Sustaining Treatment (POLST). The POLST uses a standardized medical order form to indicate which types of life-sustaining treatment a seriously ill patient wants or doesn't want if his or her condition worsens. For details, click here.